Newbie

[MummyC]

Hi, I have just joined this site because my 7 year old daughter was diagnosed with T1D 3 weeks ago. Such a heart breaking time, still is but we are trying to stay positive for her, insulin is up and down 1 min it’s fine and doesn’t hurt then the next one hurts and she cry’s she had a Libra at first but after the 2 weeks refused point blank to have an other one as the first one hurt too much. It’s all very new, worrying and sad at the minute so any advice or support would be very much appreciated

 

[trophywench]

Gosh - wonder how on earth a Libre sensor could hurt her - surely finger pricking multiple times a day hurts more than a quick press once a fortnight? Have to say my husband inserted my current one and he insisted on grasping my arm firmly before he pressed - and the grasping hurt - he has mega strong fingers (used his hands as tools most of his life which is very useful for getting Libre 'lids' unscrewed to begin with!) and doesn't appreciate I'm a delicate hothouse flower.

Have you yet jabbed yourself with a needle? Screw one onto a pen to remove it from its plastic container, then unscrew it and just jab yourself somewhere where you don't have a lot of flesh cos presumably your daughter isn't too chubby? See how much it really hurts. You shouldn't really even feel it go in! - entirely unlike any other jab you have ever had to have in your life.

 

[rebrascora]

Hi and welcome.

Sorry to hear about your daughter's diagnosis. It must be incredibly difficult as a parent having to do something multiple times daily which inflicts pain on your child. I have quite a few sites which really hurt inserting the needle and other sites which hurt injecting the insulin and some sites both inserting and injecting hurt and other sites are completely painless, so I can sympathise with your daughter. Sometimes I know as soon as I touch the needle to the skin that it is a painful site and move elsewhere but there have been times when it has been so painful I have got it half way in and aborted and found a different site to inject. Odd occasions I have hit two sensitive sites before finding a place to inject painlessly.
I consider myself reasonably tough and I can prick my fingers all day long without a problem. Whilst it might hurt sometimes, it is a tolerable pain and I would never complain about finger pricking even when I was testing 15 times a day but I do love the Libre. That said, it does insert with a fair old clunk which might be disconcerting for a child and this recent sensor pulled for a couple of hours after application like an individual hair being pulled. Not sure if maybe a fine hair got displaced and trapped in the adhesive somehow on insertion or it was the filament touching a nerve but it settled down pretty quickly. I haven't had any pain with my previous sensors.

As I said the insulin can also sting when it is injected and there are some which are known to be worse for this than others. I believe Lantus is known to be problematic in that respect but I have found that if I hit the wrong spot any of the 3 insulins (Levemir, NovoRapid and Fiasp) I have used so far can sting, so I would not be so dismissive of her discomfort. It may be possible to change to a different insulin if you find one is causing a lot of discomfort and making injecting particularly distressing, so talk to your team if that is the case.

 

[SB2015]

Welcome to the forum @MummyC . Sorry to hear about your daughter’s diagnosis. There is a lot to get to grips with so quickly at the start, but it will become just a new normal life for you all, it just takes a bit of getting used to.

My most recent Libre, definitely hurt when my OH put it in, and I have no doubt got a lot more padding than your little one. However the pain settled, and I put up with it because I know how useful it’s to me to have the info it gives me. Not so easy to be quite so logical at the age of 7. Also with the injections I used to get a bruise if I hit a blood vessel. Those were a bit of a pain, but most injections with my insulin pen didn’t hurt. For little ones it is hard enough having to do regular injections at the start so her feelings are completely understandable. Some parents have found it useful to put an ice cube in the injection site before doing the jab. I will tag some of the parents on here who may have other ideas @Sally71 , @Thebearcametoo and @rebrascora can you help?

There is plenty of help and support on here for you. Keep in touch and do ask any questions that you have. Nothing is considered silly on here. just ask.

 

[everydayupsanddowns]

Welcome to the forum @MummyC

Sorry to hear about your little one’s diagnosis, and the pain and distress she is experiencing. Even relatively small amounts of pain can build up in your mind if you know they are coming, and you don’t feel in control of the situation or that you can avoid them I think

I found Libre one of the ‘punchiest’ and most painful sensors (having used Libre, Enlite/G3 and Dexcom). Where did you insert the Libre? I’m not sure if some of our other parents whose children use sensors might have some hints or tips?

I think some forum members over the years have used a numbing cream (emla?) to help with sensitivity to needles.

I’m going to tag-in some of our regular parent posters for their suggestions @Bronco Billy @Thebearcametoo @Sally71 @stephknits

 

[Inka]

Hi, I have just joined this site because my 7 year old daughter was diagnosed with T1D 3 weeks ago. Such a heart breaking time, still is but we are trying to stay positive for her, insulin is up and down 1 min it’s fine and doesn’t hurt then the next one hurts and she cry’s she had a Libra at first but after the 2 weeks refused point blank to have an other one as the first one hurt too much. It’s all very new, worrying and sad at the minute so any advice or support would be very much appreciated

Hi and welcome @MummyC Sorry to hear about your daughter’s diagnosis. It’s absolutely understandable why you’re upset. It’s a huge shock and it does take a while to get your head round it. I promise it will gradually get easier - for all of you.

Her insulin needs will vary initially. It will take a while for her team to get a handle on what exactly she’s needs. Also, her own pancreas will be ‘helping’ by occasionally making some of its own insulin so this will have an effect on her levels.

I wouldn’t worry about the Libre. It’s not crucial. If she’s happier with finger pricks, stick with that. Giving her a little bit of agency will help her rather than her feeling everything is out of her control. One thing I would recommend for the future though is an insulin pump. None of my children have Type 1 (just me) but if they did, I’d be looking at a pump for them because it gives more flexibility and allows for more precise dosing.

 

[Thebearcametoo]

I’m sorry to hear about your daughters diagnosis. My daughter is now 10 1/2 and was diagnosed just before her 9th birthday.

We have tried Libre but found the applicator was quite uncomfortable (the hard plastic) and the sound was really scary. Plus it take a fair amount of force to get it on and on a small arm it it just too much for some kids. If she’s willing to give it another try in a few months you may find the abdomen is easier - it’s not supposed to go there according to Libre but dexcom goes there and for smaller children there’s often a bit more squish and it’s easier to fit. My daughter much preferred finger pricks to doing the Libre (and it actually made finger pricks easier when she knew there was a choice and this was the best option for her then).


For injections we find that she likes quite a firm squeeze, especially on her legs. She always did her own injections (hated injections in the bum as she couldn’t see them and couldn’t do them herself so we did basal in her thigh) but has help from us to do the pinch.

We’re now using a pump/dexcom combination but that’s after 18 months of finger pricks and injections and once we got through the first few months it was fine doing it that way. Tech is great and can make it easier but finger pricks and injections work really well and there’s no reason to rush to do anything else if it’s not working easily for you. After her Libre experience she was very very wary of cannulas and went green at the thought of it so we delayed getting a pump for a year until she was ready

Which insulins is she on? Is the hurt the insulin going in or the needles? We changed to tresiba for basal (and kept it in the fridge) as my daughter said that hurt her less. If you’re having issues do keep chatting with your team as they will have other suggestions if you push them but often default to a ‘this is how it should be done’ style to begin with.

We did big meals from the start so we didn’t end up doing many snacks in between which helped cut down on both finger pricks and injections.

 

[MummyC]

Thank you so much for taking the time to write such lovely and helpful messages. I think I will stick with the finger pricks for a while so she feels like she has some control over it, that is really helpful.

she is having the pen in her thighs at the minute, norvorapid and levimer. Sometimes it doesn’t hurt but then sometimes she says that one really hurt and cry’s. This is heart breaking for us so we just want to do everything we can to make it easier for her.

we have her first clinic appointment on Friday so be interested to see what gets said.

thanks again for taking the time to send me the lovely and helpful messages ❤️

 

[Thebearcametoo]

You can get a freeze spray or hold a frozen ice pop on her leg for a tiny bit before injecting if that helps with pain. I think it just depends where you hit as to how close it is to a nerve or a blood vessel. One thing that some people do is to touch the needle to the skin and see how ir feels and if it hurts move a little bit to the side and so in before actually injecting. We found that getting on with it even if hurt a little was better for us than faffing around though.

 

[Paulbreen]

I was diagnosed about the same age as your little girl, now 40 odd years later the technology has made this terrible condition sort of liveable. She is the perfect age for CGM and pump therapy so try to push your diabetic team in that direction.
It always seems that there is a tendency to try everything out there on the way to the pump so try and get it straight away.She has the same meds I was using for 20 years before the pump and now I just use novarapid and it works great.
Don’t let this get you down, as others have said your all going to live life but it’s just going to be a little different and really it’s not that bad once she gets used to everything that is new, a couple of months you will see her coping so well, I wish you all the best for your new adventure

 

[pm133]

As others have said, not having a continuous monitor is fine if finger testing and injecting isn't an issue for her. I've decided not to pyrsue any tech for the time being - just lancets and injection pens.

I must admit, I almost always feel the pen needle going in. There are a few places where it goes in smoothly but most places do cause a sting. Pushing the plunger also stings and I need to use both hands to steady the needle otherwise I end up pressing at an angle and that stings too. That's before I mention the occasional small lump which forms if I get it wrong.

I hold the needle on the surface and let gravity and very gentle pushing do the work of getting it through the skin. Sometimes bunching up a skin fold helps but doing this too tightly forces nerves closer to the surface and makes it worse. It's trial and error. I can't imagine the horror of having to do this at 7 years old. The suggestion of a numbing agent is a good one - maybe a lump of ice for a few seconds or get her to flick the skin where you are about to inject. Do you let her inject herself? Maybe she'll find it easier having that bit of control?

 

[Paulbreen]

It’s a great idea to let her do it herself, another thing I would say is ask her what she would like and don’t make decisions for her without her input, she may surprise you

 

[helli]

I was diagnosed as an adult so have no experience of diabetes as a child.
However, I feel vocabulary is very important - describing this as a "terrible condition" (which I am sure @MummyC is not saying to her daughter) is not helpful to anyone.
Personally, I look to people in the media with type 1 diabetes for inspiration. I don't know how relatable they are to a 7 year old but maybe watching a movie with Halle Berry in or listening to Haim or watching a rugby game with Henry Slade playing and mention that they have type 1 may make diabetes less scary and less of a "terrible condition".

 

[adrian1der]

Try Robin Arzon who is an instructor with Peloton. She is type 1 and according to Wikipedia has completed 25 marathons, three 50-mile ultramarathons, and one 100-mile race!

 

[Paulbreen]

I was diagnosed as an adult so have no experience of diabetes as a child.
However, I feel vocabulary is very important - describing this as a "terrible condition" (which I am sure @MummyC is not saying to her daughter) is not helpful to anyone.
Personally, I look to people in the media with type 1 diabetes for inspiration. I don't know how relatable they are to a 7 year old but maybe watching a movie with Halle Berry in or listening to Haim or watching a rugby game with Henry Slade playing and mention that they have type 1 may make diabetes less scary and less of a "terrible condition".

Let’s call what it is compared to a “normal” life it is terrible and I doubt anyone would tell a 7 year old that, I don’t need to look at celebs for inspiration, I went to university, I played competitive rugby for 8 years and I run a successful world wide engineering business supporting aerospace manufacturing companies such as Airbus, Boeing and more. people can accept this disease and get on with life or bury their heads in the sand, yes sometimes it’s hard to deal with but mostly it’s just a annoying distraction

 

[Inka]

@helli I thought Halle Berry had Type 2? There was some kind of confusion and controversy around what she said, I think.

Celebs and athletes are good role models but I also think it’s important to see ordinary people living their lives with Type 1 just like everybody else. We don’t all have to be Hollywood stars, rock stars or supreme athletes 🙂

 

[Bruce Stephens]

I thought Halle Berry had Type 2?

wikipedia says (with citations, obviously) it's T1.

 

[helli]

Let’s call what it is compared to a “normal” life it is terrible

I know I am a realistic optimist who looks for positives out of most situations but, thankfully, for me, Type 1 diabetes is not terrible.
Like you it has not stopped me living my life to the full. It requires a bit more organisation but Type 1 has never got in the way of my career, my love life, my sporting aspirations, my travel, my culinary desires, ...
And along the way, I have met some great friends and played with some fun technology.

I would never wish it upon anyone but with the current technology and drugs available today and the progress that is being made, I don't believe Type 1 is the terrible disease it used to be.

 

[Inka]

wikipedia says (with citations, obviously) it's T1.

Hmm, she herself claimed she’d reversed her Type 1, weaned herself off insulin, and was now Type 2. More recently she made a post recommending LCHF for ‘people like her’ with Type 2 diabetes.

I don’t know what type she’s got, but her comments caused a lot of confusion and “if Halle Berry can wean herself off insulin, why can’t you?” comments. I’m happy to see her as a role model for women but personally not for people with diabetes.

 

[grovesy]

@helli I thought Halle Berry had Type 2? There was some kind of confusion and controversy around what she said, I think.

Celebs and athletes are good role models but I also think it’s important to see ordinary people living their lives with Type 1 just like everybody else. We don’t all have to be Hollywood stars, rock stars or supreme athletes 🙂

I too thought that too!